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Charlie21 Asked January 2015

My Mom (93) is stubborn, type A personality and wheelchair bound refuses all activities besides Target. Any advice?

She has always been in charge of multiple organizations, and put her volunteerism before family. She has memory issues, yet tells everyone she has a brain that works and will have temper tirades if caregivers don't do what she says. She can be very verbally abusive to get her way. She refuses to be taken to visit friends, go on walks, or do anything except shop and go to church. She has macular degeneration in one eye and limited vision in the other eye...her hands are very crippled so doing tasks is very difficult. She gets very antsy staying at home and wants to be taken out every day but limits it only to Target. It's a challenge to redirect her and anything suggested she refuses. She lives in her home with 24/7 in home care, and refuses to consider assisted living (my sister is an alcoholic and would fight any out of home placement). Her community offers a senior center for activities, but she refuses to go...I'm at a loss on what to do and how to help the caregivers manage a very aggressive and controlling stubborn senior. She could be so much happier if she were open and had a bit of a positive attitude. Any suggestions would be appreciated.

surprise Jan 2015
One of my mother's friends who sounds very similar to your mom decided she was bored at home so she WANTED to move into the local upper class assisted living (she'd been a famous person's wife). She LOVED all the activities with people who were like her and who "knew who she was". Perhaps if the trips to Target stopped, you could manipulate the situation so that Mom would want to visit the best AL around her area, which has to be less than 200K a year (the wife's was cheaper than that).

Yes, you promised to keep her out of AL, but that was before the situation changed. Promises made without knowledge of the future situation are not something to keep for moral reasons. And I think Mom would be a lot happier. I know mine was.

Charlie21 Jan 2015
You know what's hard...my mom has always been a social person...involved in every organization you could imagine...but IN CHARGE of them...since resigning...she has "nothing"...and no one comes to visit her. Her very strong, self-centered, and must be in control personality makes it difficult for even friends to want to be around. Like I said earlier...she chose in life to put her organizational work, positions, and travels above family. So being "alone" is not normal for her...I understand why...but it's still hard to see her world so small...sometimes due to her own doing.

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Charlie21 Jan 2015
Jessebelle...thank you for your input.I can see you understand. My mom does most of her grocery, and personal need shopping at Target, which has worked. Her CPA and i sat down with her awhile back and explained to her both verbally and visually the problem with her use of money...and how it lead to over $600/month in theft (she'd go to bank and withdraw $500 at a time...multiple times a month for JUST personal needs...NOT bills). We were able to get her to FINALLY leave the bank alone and only use a credit card...that way we could monitor spending as well have the backing of the bank for theft or fraud. That transition was tough, but it's going well...we also got all service workers (housekeeper, manicurist, handiman...) being paid by check instead of cash like she always had...all bills are paid by her CPA. So things are better if we can keep her distracted from just spending because she can. I appreciate all of your input...lets me know we're not alone in this effort to care and love our parents to the very end.

bigsispjt Jan 2015
You all have provided such loving insight to this question Though it is not mine, it is helping me with in dealing with my mother's decisions that include watching "Judge" shows every day on television. That's who she is. She goes down to play cards in the community room of her senior building, goes to get her hair done, and talks on the phone. Looking back she has never really done much more than that. My dad was the person who got them out of the house for their social life. Thank you for letting me see I am not responsible for her social life, though I do things with her even though she is limited in terms of her mobility and refusal to use a scooter.

Charlie21 Jan 2015
Thank you for your thoughts and input...many of the suggestions we have addressed, implemented, or had to set aside. My mom refuses any consideration of assisted living, and we have agreed to honor her wishes. When care began we used private care contractors, but had to change to using an agency due to no one living in-state to monitor the care. THere was a lot of theft, and my mom had no idea. Costs for 24/7 in-home care with an agency runs $165,000/year...plus your normal personal costs...home repair, insurance, taxes, utilities, etc...food, clothing, RX's...the list goes on. For her, it consumes about $200,00 a year, which is about $20,000 more than the private contractors. No, she has not seen a psychiatrist, neurologist, etc...She refuses ANY doctor and has ALWAYS been very private about her health up until her hospitalization for goofing up her blood pressure meds, etc (herself). At this point, she will not sign HIPPA papers and maintains confidentiality unless I'm there to hear the doctor, or the caregivers can gather info. I am her POA, but under the law it is useless unless the person is compliant and is cooperative. I have talked to her attorney who verified this, and said that a "conservatorship" would be needed, but is very costly...and VERY difficult to get...especially because I do not live in-state...nor does ANY family member. A geriatric manager sounds nice...but then again, that's an additional cost we can not do...nor would my mom accept. Her memory, ability to problem-solve, analyze, or trouble shoot...is greatly diminished...to the point where she will repeat herself 3-4x in a 40 min conversation. Her world is small, and we try and give her the freedom to do what she wants...safely and securely...and wisely. I DO trust God, every day...to give me wisdom, patience, and foresight...and strength to walk the walk with my mom. Love drives everything. Yes, I have had to confront her from time to time when she is out of line...but in a very loving manner...remembering that she is my mom...and doing it in a way that maintains her dignity and self-respect. You are right...it IS hard and cost my family a lot...time, energy, emotions, and brain...as well as time we would be spending together. I realize that the time may be short, and I want to be there for her...and hopefully my kids will respect that.

Srmaddox Jan 2015
How can I get a more positive attitude from my mother? She lists off reams of complaints at every opportunity, says she has had a bad day, and she is NOT OK...she is wheelchair bound with dementia. I would be negative too. I just can't take it anymore with the negative lists. How to modify her behavior?
Also she keeps her room 80+ degrees and I am doubly stressed by smothering.

Srmaddox Jan 2015
As to overspending, I finally got a prepaid debit card for my mother. I put $250 per month on it and when it is gone the cashier gets the task of telling her she can't buy more, not me. I have told her I am controlling her spending so she won't run out if resources, a very real fear for most. It has worked perfectly for three years plus..

JessieBelle Jan 2015
Charlie, it sounds like you have everything fairly well managed from your end. Things may change in the future, but we have to take one day at a time. The only real problem I see is the spending, which does seem a bit obsessive/compulsive. But what to do? It is so important for elders to keep a sense of control over their lives, and I understand that so well. I would also hate losing control over my life. I guess the only thing to do is to talk to her about money and cutting back on spending for non-food items. Target also sells food, so maybe she could be directed to the food aisles of the store. (But I have a feeling she prefers the clothes section, and I understand what you mean that some of those clothes are real rags.)

I wish we had magic wands we could wave over our care receivers that made them do what is best for them. The only thing we can do is talk to them with understanding and try to influence their behavior.

BarbBrooklyn Jan 2015
Charlie, like Blannie, we attempted to do what mom wanted, ie, stay at home. It didn't work FOR US. Mom's emergencies became a daily occurrence and I finally sat her down and told her this wasn't going to work. One of us was going to get killed in the snow trying to get to her, or my brother would have a heart attack from the stress of coordinating two households.

The only person whose behavior you can change is you. Make sure hat you take care of yourself.

kathyt1 Jan 2015
Why not let her do exactly what she wants, stop fighting, and start agreeing. If you can't do what you want at 93 when can you. I had this same problem with my 93 year old stage 4 Parkinson's Dad. When I just let go, and accepted that he was wise enough to control his own life, my nasty Dad turned back into the calm reasonable man he has always been. Keeping control of decisions that effect their life is paramount to them. When you let go, and let God, you start to enjoy your Mom again. I don't always agree with Dad; sometimes i think he is a damn fool, but it is his decision.

Letting go, learning patience, keeping my mouth shut, admitting I wasn't the smartest person in the room, was the hardest thing I have ever done.
I am doing this 24/7 caregiving because I love that man. He was a wonderful father, not perfect but I was loved. I had to ask myself, what good is keeping him home out of a nursing home, if he is miserable. I respect his automony, even if he is a stubborn fool. If your Mom doesn't have dementia, or very little, let her enjoy her life. Lay the burden down.

blannie Jan 2015
Charlie I have a mom who is very stubborn and wants to be independent. She was forgetting her meds and it finally got to the point where it impacted me and I'd had enough (we spent 4 hours in the ER and another doc's visit and lots and lots of care and discussion about her bad leg from not taking her blood thinner).

That's when I put my foot down and told her we were getting help in 2X a day whether she wanted it or not. She knew at that point that I'd had it. Sometimes, since you're the one who's doing the work to keep your mom (and maybe sister) afloat, you have some rights as to how things are done. So you have to be a bit of a tyrant yourself, to let your mom know that you're an adult now and you are responsible for her care and things WILL be done in a way that is best for her long-term health and well-being. Just like you would do with a child. Because by the time our folks get into their 90s, some of their cognitive abilities are gone. I'm sure that doesn't happen with everyone, but it has happened with my mom and I have to act accordingly. I want her to be healthy and happy in her final years and that may mean she doesn't always get her way.

It's been about eight months now since the girls started coming in to give her meds and she's fine with it now. But it took me putting my caregiver foot down to make it happen.

As others have said, caregiver stress is a killer (1/3 of us don't outlive our charges), so you have to take care of yourself too. I would consider cutting back on your visits and look at getting a geriatric care manager to oversee your mom's care locally. They are professionals (usually former nurses) who can coordinate care and keep you fully updated. They're not cheap, but you could get your life back with their help. Good luck and keep us posted. And vent whenever you want to.

BarbBrooklyn Jan 2015
Charlie, you must be exhausted! Flying cross country every couple of months to manage this, make house repairs, spend time with Mom? Plus, does your sister live with mom? You almost make this sound doable! But I'd be at my wit's end. Please make sure that stress doesn't become overwhelming for you. Remember that 1/3 of all caregivers die before their charges. A lot of us have personal, family experience with that.

The problem, it seems to me, is that mom is spending her resources without an eye on her future needs; Has this always been an issue with her, OR Is THIS NEW behavior? Is she supplying your sister with alcohol? Again, new or always.

Has your mother ever been seen by a neurologist, or a psychiatrist? Does she have cognitive decline or dementia? Has she ever been diagnosed as having a personality disorder, or with Bipolar disorder?

Just some questions to mull over. Do you have POA? Are you in contact with her doctors?

Charlie21 Jan 2015
It's hard to describe the situation, but thanks for understanding and for your affirmation. My mom will DEFINITELY go balistic if we tried to put her on an allowance:) ANY attempts to, as she would say, "control" her would meet with venom. Though memory is an issue, she can still pull things together for a bit, and immediately hits the ceiling if she senses any threats to her "contol of her life." Thus I have to VERY carefully manage from behind the scenes and redirect her and teach the caregivers (who have gotten much better at this) how to handle her difficult personality. I have to say...she can be very pleasant depending on the day and mood...and if she can get out. I wish her trips to Target were just "getting out."...but she goes to "get out," and will find anything to buy to legitimize her trip. This summer she had the caregivers give away all her clothes (just about all) to a shelter and then went on a mission to buy a whole new wardrobe of very cheap looking and poorly made clothes (SO not her) when her original clothes were is great condition...doing so gave her an excuse to get out. I have to say, the caregiver at the time was stealing $$ and loved to shop...so that had to be dealt with, but the pattern of chronic shopping started there. Frustrating. Like I said, right now the gals who work with her are great and know the importance of confidentiality, and how to redirect (though not always possible).

jeannegibbs Jan 2015
Ah, I see. The daily trip to Target is not so much the problem as the daily overspending. That could be a real problem.

How would she do with a daily allowance? If she wanted something that costs more than that amount, she'd have to save for a few days to be able to get it. Could that be presented as a kind of game?

It sounds as if you are doing an awesome job in very challenging circumstances.

Come back and vent any time. And if you come up with some strategies that work to give Mom more stimulation and reduce her boredom, please share. We learn from each other!

xxxxxxxx Jan 2015
There is a difference between an outing to Target, and a shopping trip to Target. If she's overspending, then that's a whole 'nother issue.

I can relate to the no visitors coming. I we want to see anyone, it seems like I have to call and make the trip to their house. It has become nearly impossible anymore seeing MIL is in bed all of the night and most of the day. She is to the point where she might like the idea of going out, but not the reality. Battles have been fought with less planning than it takes just to get us out of the house. But we persevere. Didn't know you were across the country. It must be very tough on you. I'm sure you're doing a fine job.

Charlie21 Jan 2015
I do accept my mother's aging, limitations, and increasingly reduced sphere...also know i can't make her happy...that is an intrinsic. She has no family living in her state, and though we have asked her to come with us so she could be near her large family, she refuses and says she has to take care of family heirlooms in her home...I understand and accept that, but being responsible for her care, and managing her overall safety and security from 2500 miles away is not easy. I fly out every 3 months for 2-4 weeks to spend close time with her, make adjustments, repairs, or handle any situations that arise...spend time with the caregivers and supporting them...then when home troubleshoot via phone, text, or emails...while maintaining nightly conversations with my mom. I love you so much...and know its my wishful thinking for her to have more positive stimulation, which could be beneficial for her mentally and emotionally (being around friends, and people...almost no one comes to visit or call her anymore...many of her friends have died, or have problems of their own)...I do realize it is her choice and there is nothing I can do to change that. The caregivers are excellent and know their jobs wonderfully...while I understand the concept of her being comfortable in her "target" shopping...we have had problems with excess spending, theft, and mismanagement of money in the past. Those issues have been resolved, but she tends to revert out of boredom to "spending to spend." Yes...careless expenditures are a concern when you need to ensure there's enough to cover all expenses (no long term care policy) for possibly a few years to come. We have relatives who have lived past 100. Maybe I'm just venting...and frustrated...I appreciate your input...and have heard it before and acknowledge its truths. Thanks

JessieBelle Jan 2015
Charlie, it sounds like your mother has comfort zones that she doesn't want to venture out of. Do her caregivers take her to Target or does family have to do this? I can see how it would be inconvenient. If caregivers knew it was part of their daily chores, they would understand and maybe enjoy getting out with your mother. Is her spending reasonable for her financial situation?

I wouldn't worry about getting her out to different places. It may just make both her and you miserable to try. As they get older, people tend to have comfort zones that get smaller and smaller. In many cases during late life, the zone become limited to the home. This is to be expected, even if it seems bad. I would say to encourage her to do things, but don't worry if she refuses. If she is safe, healthy as possible, and content it is the main thing.

xxxxxxxx Jan 2015
You say she has macular degeneration and limited vision in the other eye. Well, she probably feels more comfortable in the same environment. Memory issues and limited vision doesn't add up to being adventuresome. I'd sure be pretty cranky if I had memory loss, vision loss and painful crippled hands.

You may as well get used to the idea that the mother you once knew is gone. In her place is this woman with all her issues. The caregivers should have training that will help your mother with her temper and limited abilities. Good luck.

jeannegibbs Jan 2015
And the problem with going to Target every day is .... what, exactly?

Mom might be happier if were open and had a more positive attitude. She might be happier if she were 60 and still in charge of organizations. But you can't make either one of those things happen. And ultimately it is important to know that you are not responsible for Mom's happiness.

It sounds like you have ideas for giving Mom more stimulation and more variety in her life. She refuses your offers. You can only do what she'll allow you to do. Don't feel guilty or beat up on yourself.

My 94 yo mother is wheelchair bound. She makes one trip to Walmart a month, if the weather and her health cooperate. (She is a two-person transfer and outings are challenging.) She plays bingo and goes to live entertainment in the nursing home. She has one or more family visitors each day. She is content. Why? Not because any of us have discovered the caregiving key to making our mother happy! But because that is who our mother is and how she has always approached life.

You may simply have to accept that your mother is who she is. You can try to remove barriers to her happiness and to present opportunities to be happy, but you cannot make her happy.

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